Hi,   I wont know all the details until they call me. Cant depend on neighbors. But if I know its coming I can open the blinds and watch for the truck ,and hope they dont come when Im in the John or letting the dog out. The drug clearing house is BioServices, I have the name of the Pharmacy written down somewhere under all this clutter on my desk. Thanks    Michaele

Thanks Brownie, good idea.   Michaele

 Michaele, Is there a trusted neighbor who could get and hold it for you? Are you getting 30 days at a time? Mine is sent every two weeks to my HMO's pharmacy. Picking it up is always lengthy as they never seem to know where it's hidden. Then I have to sign for it when they finally retrieve it. I'd be a bit concerned, too, if it was just showing up on a doorstep-- Especially this time of year.

Mine came from a specialty pharmacy using a courier and required a signature. I was even asked what time frame was convenient for me. If they send it UPS or Fed X, you can request they hold it at their local facility where you can pick it up. It being Christmas time could mean long lines tho. 

Hi again, Im already a member wiith UPS, but they are some of the people that dont get required signatures. , but thanks again....Michaele

Hi Michaele,

It will depend on whom your pharmacy uses for shipping. My experience and shipments were with UPS. If you're not familiar with this service (UPS My Choice), I'll provide you a link to it. All you have to do is sign up for it. From then on you will receive a notice in advance (email), notifying you of the shipment and will include a tracking number if one has been generated. This will apply to anything you use UPS for. It's all automatic once you sign up. If someone uses your address to ship something, you get an automatic notification from UPS of the delivery. It works very well and has notified me several times of packages I didn't know were coming or had forgotten. Check it out by signing up HERE. I'll make sure it works after I post this.

Tig

Tig Thanks again, I'll make sure to clarify that, but there have been timed I asked for a signature required and still had packages left on the door threshhold with the mat throw over it. But having a call to let me know its on the way is helpful. Dont suppose they give you a tracking number.   MIchaele 

Michaele,

That is certainly something you should confirm, but the two specialty pharmacies I have dealt with made a signature delivery requirement part of the process. I would be surprised if they haven't already made this a requirement. I even got a call the day before delivery to remind me that I had to be home to sign. You also may be able to contact FedX or UPS and find out, using the delivery address for reference. It would be an expensive snatch and grab! Good luck!

Tig

Sassy, Thanks for advise to take it easy. Hope your doing well.  I'll never look at a train the same way again.    Michaele

Hi Cinnamin Girl, yes its very good news, thank you. Now Im obsessing on whether or not the service that delivers has orders to  get a signature and to not leave it on or under the mat. Its Christmas time and the  service in this town is terrible. They dont bother to get a signature. Living in a corner house makes it easy for anyone to grab and dash,some how I cant imagine anyone sending over $30,000.00 worth of drugs with out a signature being required. Any one know the rote.      Michaele

Congratulations on your approval and the okay to get on that train you'be been waiting on. All aboard cause the train is about to leave the station for Michaele. I am so happy for you. Hipr your miracle happens soon. Be gentle with yourself during tx since side effects can happen. Good luck and slay the dragon

gigi

That is great news at last, Michaele, very pleased to hear this..huge sigh of relief!! 

Thanks Brownie, I learned patience because I had no choice . Family: cant live with them, cant shoot them. Hope everything is going well for you on this day and the yrs to come .... Michaele

Michaele wrote:

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Just heard from Tx nurse, she has given the Pharmacy the go ahead to ship drugs. Im to call her for  appoint ment as soon as drugs arrive. WootWoot.......Michaele

---

 Well it's finally happening, Michaele. I've been following your posts & think you have the patience of Job. So glad that the system is now working for you, instead of against you. An early Christmas present for sure  and a happier New Year to come!

Tig56 wrote:

---

Hi Lon,

Amen Brother! I like the way you think. Brings to mind the old song "Don't Worry Be Happy". 

I'll be out taking that walk....         Tig             

 

Ahahahahahaha-That was a blast from the past! Robin Williams and was that Christopher Reeves? Thanks Tig, I needed a laugh.

---

Hi Lon,

Amen Brother! I like the way you think. Brings to mind the old song "Don't Worry Be Happy". 

I'll be out taking that walk....         Tig             

Harvoninme wrote:

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ahhh, man

 

---

 Loved that video, thanks! Thought at first he was going to sing, You've Got a Friend.

Lon wrote:

---

I never try to understand or interfere with God's plan.  Everyone goes when their time is up.  If someone is alive today, it's because God has chosen to keep them alive.  If someone is gone, it's because God has chosen to take them.  It's not for me to try and understand God's rhyme or reason.  It's far beyond my ability to comprehend God's plan for us.  

Let's try to enjoy the day, forget about yesterday and try not to worry about tomorrow.  Our lives will be over before we know it.  Let's not waste time cursing Gilead or the FDA.  Instead let's rejoice that we are alive today and with God's blessing might be here again tomorrow.  

I'm going to shut off this computer, play some guitar and then taking a walk to get a hot fudge sundae.  Tomorrow I am going to blow off work, sleep in and maybe go to a movie.  If the weather is nice, I'm going to take a long walk along ocean and get a lobster roll with fries for lunch.  

I don't intend to waste another day again ever.

Can I get an Amen over here.

---

 I am not a religious person but I love a happy person with a great attitude. Amen from me and wishing you the best . . . Brownie

Thanks Tig ,   Your a busy, busy man careing about so many....Michaele

Thanks Ro, Hugs all around.....Michaele

Thanks , life is looking brighter.... Michaele    Hope your Tx is a breeze

Yeah!!!!!  Wonderful news!!!!!  So happy for you!!!

Thats wonderful news!! WOOT-WOOT is right!!!! Now you can get down to business and snuff out that dragon! So happy for you Miichaele 

Tig

Best news I've heard all day!

Just heard from Tx nurse, she has given the Pharmacy the go ahead to ship drugs. Im to call her for  appoint ment as soon as drugs arrive. WootWoot.......Michaele

I just wait to get reinstated , CT in a yr to check growth.

So I am confused. Do you have to have another EUS with biopsy or do you get to start the " Mother May I " game of getting Harvoni from the insurance bullies? Whose patootie do I have to come kick??

I had a 2nd biopsy on 11/24/14 and the follow up was today with Ca Dr. Everything is neg. and so I can now proceed with Tx. Even Im getting comfused. ECU is a teaching hospital, so they  jump on anything with a pulse.When I was feeling that bubbling in the URQ last month they sent me for an US of  the liver and gallbladder, but when they saw a 2cm cyst on my pancreas,  they decided to refer to it as a mass. They didnt ask me for  a Hx or review the chart. They  decided in a blink to send me to a Ca specialist and referred me back to my favorite GI. Had my treatment nurse not seen it on the new charting she would not have called and said Dr. will not treat until we resolve this issue. Being desprate for my Harvoni I had to go along with the tests. And with all the hoopla they made of it I was starting to worry. My G, whom I will see on the 4th,  thought its was all hooey, as she has been observing cyst/mass for almost 6yrs. And as usual she was correct.   Michaele

Is this an old delay? Didn't you just go through all the hoops to prove the mass was again benign? What am I missing? Is this delay the result of someone affiliated with the ECU Clinic you spoke about? Good grief! >>>HUGS<<<

Tig

Thanks "B"  Michaele

Michaele, I'm hoping you will have that Harvoni in hand very soon, you have definitely had more than your share of delays. Good luck!

Tig, its always something. Someone on the forum said the first thing they were asked was, do you have Ca or are you terminally ill ? So take your pick cant receive Tx with chemo and if your terminal, it appears to be a waste of meds and money. Its cruel. I am neither suffering from Ca nor terminally ill. Dont know how long it will take for everything to be worked out. Im just sitting in the railway station, waiting for the ticket window to reopen.  Michaele

Miss B after waiting delay after delay, I got approved for 12 wks tx. A few hrs after I got the approval call , my Tx nurse called and tells me she read new reports and noticed I had a ultra sound a few day before and a pancreatic mass was noted. I was told Dr. will not tx until pancreatic Ca is ruled out. I have had a pancreatic cyst for almost 6 yrs, that has been frequently observed and biopsied 5.5yrs ago. Point is .had  anyone read the file they would have realized it was benign. but to be on the side of caution I had to have another CT scan with pancreatic protocol  and an EUS with biopsy to rule out Cancer. The nurse said getting the approval reinstated would be no problem if I were Ca free. And had not started Tx hence the approval/delay  . Hope that answer you question  . Michaele

Michaele, I'm confused. Approved & delayed? For how long & why?

Who delayed your Tx Michaele? Doctor or M/C Part D?

Tig

Medicare part D approved 12 wks with F4, Tx delayed 

ahhh, man

Lon wrote:

---

I never try to understand or interfere with God's plan.  Everyone goes when their time is up.  If someone is alive today, it's because God has chosen to keep them alive.  If someone is gone, it's because God has chosen to take them.  It's not for me to try and understand God's rhyme or reason.  It's far beyond my ability to comprehend God's plan for us.  

Let's try to enjoy the day, forget about yesterday and try not to worry about tomorrow.  Our lives will be over before we know it.  Let's not waste time cursing Gilead or the FDA.  Instead let's rejoice that we are alive today and with God's blessing might be here again tomorrow.  

I'm going to shut off this computer, play some guitar and then taking a walk to get a hot fudge sundae.  Tomorrow I am going to blow off work, sleep in and maybe go to a movie.  If the weather is nice, I'm going to take a long walk along ocean and get a lobster roll with fries for lunch.  

I don't intend to waste another day again ever.

Can I get an Amen over here.

---

 AMEN! 

Well said Lon. Enjoy the day!

- Tess

I never try to understand or interfere with God's plan.  Everyone goes when their time is up.  If someone is alive today, it's because God has chosen to keep them alive.  If someone is gone, it's because God has chosen to take them.  It's not for me to try and understand God's rhyme or reason.  It's far beyond my ability to comprehend God's plan for us.  

Let's try to enjoy the day, forget about yesterday and try not to worry about tomorrow.  Our lives will be over before we know it.  Let's not waste time cursing Gilead or the FDA.  Instead let's rejoice that we are alive today and with God's blessing might be here again tomorrow.  

I'm going to shut off this computer, play some guitar and then taking a walk to get a hot fudge sundae.  Tomorrow I am going to blow off work, sleep in and maybe go to a movie.  If the weather is nice, I'm going to take a long walk along ocean and get a lobster roll with fries for lunch.  

I don't intend to waste another day again ever.

Can I get an Amen over here.

Tess wrote:

---

Isiscat2011 wrote:

---

I'm not certain how God would view trying to circumvent the AASLD guidelines for treating the sickest first but  I have a pretty good idea.  ;)

---

From the AASLD Guidelines:

"Because of the myriad benefits associated with successful HCV treatment, clinicians should treat HCV-infected patients with antiviral therapy with the goal of achieving an SVR, preferably early in the course of their chronic HCV infection before the development of severe liver disease and other complications."

I have no idea what God thinks about the AASLD guidelines, but I'm pretty sure God prefers kindness over animosity towards sick people looking for help.

---

The AASLD's position is that everyone who has HCV should be treated but that some can medically afford to wait while others cannot.   Taking a single sentence out of context will not alter this reality.  

The lack of kindness is coming from those who refuse to respect the medical profession's distinction between the medical needs of an F-0 from an F-4. It is divisive, hurtful, and irresponsible to continue insisting that everyone can be treated immediately and that no medical distinctions should be made.  

Isiscat2011 wrote:

---

I'm not certain how God would view trying to circumvent the AASLD guidelines for treating the sickest first but  I have a pretty good idea.  ;)

---

From the AASLD Guidelines:

"Because of the myriad benefits associated with successful HCV treatment, clinicians should treat HCV-infected patients with antiviral therapy with the goal of achieving an SVR, preferably early in the course of their chronic HCV infection before the development of severe liver disease and other complications."

I have no idea what God thinks about the AASLD guidelines, but I'm pretty sure God prefers kindness over animosity towards sick people looking for help.

Tess wrote:

___________________________________________________________________________________________________

Hi Lon,

Yes, I have BCBS and was approved right away.  I went for blood work on Thursday 11/13/14 and was approved on 11/24.  Best of luck to you!

- Tess

---

Based on what we have seen here this quick and easy approval is the exception, not the rule, for most people who have BCBS and particularly for those who do not have advanced liver disease.  

The answer will depend on many factors including but not limited to your location, the specific BCBS payer, (there are hundreds) your policy, etc. There is simply no way to accurately predict from a message board whether someone will be approved or not, but in general, the sickest are being given the highest priority for tx.  

I'm not certain how God would view trying to circumvent the AASLD guidelines for treating the sickest first but  I have a pretty good idea.  ;)

Harvoninme wrote:

---

Lon wrote: "God opens doors, but he expects me to do the leg work and walk through them. :)"

 

Loved that, Lon. I have faith you will make it through this, too. :)

         ________________________________________________________________________________________________________________

I guess God forgot to open the door for the many who have suffered and died from advanced HCV.  

As far as I know God doesn't cure HCV, science does, and unfortunately money and humans decide which doors are opened to whom.  And no treatment is 100% certain.

Please remember that we are all entitled to our own beliefs before attacking me for writing this.  

Lon wrote: "God opens doors, but he expects me to do the leg work and walk through them. :)"

Loved that, Lon. I have faith you will make it through this, too. :)

God opens doors, but he expects me to do the leg work and walk through them. :) 

I was born well equipped and have complete faith that I can accomplish all things through my faith in God.  

I don't view this as irony, but as a perfect partnership.

I have absolutely no doubt that I am going to received this medicine and it's going to be 100% effective in eliminating my virus first time.

The side effects are going to be a cakewalk for me.  

I am absolutely 100% positive that this treatment will be successful.

I'm looking forward to getting this successfully behind me, and moving on to conquer the next of life's challenges.

I wake up every morning and tell life to bring it, give me your best shot.

Good luck to you and God bless.

Lon

Lon wrote:

---

Hello,

Is the group finding that most good health insurance companies are willing to cover the cost of 12 weeks on Harvoni?

Best Regards,

Lon

 

---

Hi Lon,

Yes, I have BCBS and was approved right away.  I went for blood work on Thursday 11/13/14 and was approved on 11/24.  Best of luck to you!

- Tess

Hi Lon:

2 docs, 2 insurance plans, a PR attorney, a possible testimonial deal, and a search for loop holes.  For someone who believes in the power of prayer you don't leave much for God to do.   Oh, the irony.  ;)  

FYI:  If you are denied twice by insurance Gilead may provide tx.   Gilead doesn't advertise its medical criteria, if any, but apparently the income restriction (must earn <100K) is flexible for now--who knows-- Gilead reserves the right to terminate its financial assistance program at any time.

Also, F-2s are considered "High Priority" under the AASLD guidelines so the wait might not be as long as you are anticipating.  You may be F-3 by now in which case you should meet the medical requirements under just about any policy.

Strength and Honor.  

Thanks.

I'm doing my viral load count preparation next week.  My Gastro is going to process my application for treatment the first week in January.  I'm an F-2 I think they said.  It will be interesting to see how it goes.

This year I picked up second coverage of commercial health insurance and have a second Gastro lined up in case the first doctor is unsuccessful in getting my application approved.  So the first attempt next month with be with Gastro #1 and Health Insurance Provider #2.  If that fails I try again with Gastro #2 and Health Insurance Provider #2 goes into motion.

If both of those fail, I switch to my ground game which is essentially understanding what constitutes and F3 condition and begin working to have my condition reclassified as a F3.  Most of the fibrosis classification is subjective.  If I go into a Gastro stating that I'm an F4, there's a good chance that we can get it rolled in on at least and F3.  The fact of the matter is, I could be an F3 today but some overly optimistic radiologist thought he was doing me a favor by calling it an F2 a few years back.

If the ground game fails, I drop all health insurance coverage for a short time and apply directly to Gilead, medicine in exchange for testimonial work.  A good PR Attorney might be able to get that to fly.

Worst case scenario, I wait another year or two until a new pharmaceutical company get's in the game to make the pricing more competitive.  

I need to keep reminding myself that I've waited 35 years for treatment, and my tests are all normal.  Chances are waiting another few years isn't going to kill me.

I will submit a few posts during the next few months to let everyone know how I made out working within the establish approval system.  If I discover any loop holes that might enable a person to receive medical treatment, I will mention it.

Good health insurance companies....ah, an oxymoron, especially when it comes to HCV tx.  

I responded in another thread but most are not willing to cover 12 weeks unless you have advanced liver disease, in which case they should be covering 24 weeks for the tx experienced, but may indeed only cover 12.  There are a few exceptions and I have seen one cover 8 weeks for an F-2 who also has NASH.  

Not a pretty picture on the insurance front at the moment.